Friday, October 31, 2008

This is the first Friday Halloween that I remember. Maybe I just haven't been paying attention. The kids are excited about trick or treating. I have a feeling that I'll be carrying Cody half of the way.. We usually go to another nearby neighborhood because the houses are too far apart with lots in our neighborhood.

Today Cody also goes for his MRI at Georgetown. I will be taking him. Diane will take him one day next week for a couple of other things. If all comes out OK with the MRI we will stay the coarse with the 3f8 treatments in N.Y.

I'll check back later when I have more info.

Don't forget to order you Christmas Cards.. You are giving to a great cause while getting some great cards in return....

Sunday, October 26, 2008

Diane told me I needed to update the blog. I kinda had to get a few things done at home this week so I wasn't too worried about it.

Friday was a crazy day. Cody had his bone marrow first thing in the morning and then had to go straight to his 3f8 treatment. The bone marrow went well but it's the coming out of the Propofol that is hard for him. As soon as he wakes up I have to try to get him to drink the Beta Glucan. He must drink it an hour before he can start the 3f8. So, we were very pressed for time and had a train to catch at 4:00. Well, it was pure hell trying to get him to down that Beta Glucan. God was looking down on us because after the late start we were lucky enough that he did not need a rescue. This meant that he came out of the treatment in short order. So, we finished, got back to RMH and made the train in plenty of time. We made it back to DC by 8pm. Diane picked us up and the boys were so happy to see each other. I'll tell you, no matter how hard Cody plays and hits Justin, Justin takes it in stride and just enjoys being with Cody. I think he realizes how precious his time is with Cody. Most older siblings don't tolerate their younger siblings.

Daniela has had a rough week. She has been dealing with a virus all week. She missed school all week and has just been miserable. We had her stay at Diane's sisters Friday night just to give her one more day before possibly exposing Cody to that virus. Well, she is home and doing quite well. She actually went with me to a friends to watch the Steelers lose today. What a rough game!!!

By now you have noticed the Cody song. It was written just for him by an organization called 'Songs of Love'. They talked to us on the last trip to NY. They asked all kinds of questions about Cody, his likes and dislikes. The song made me cry the first time I listened to it. If you like the song you can go to www.songsoflove.org and click on the Family & Friends Ringtone Download link. Simply type the last name Johnson in the 'Child's last name' field and the number 16836 in the 'Child's Record Number' field. There is a minimal fee that is charged for the download. It helps these wonderful artists and people afford to continue to bring joy into the lives of these children.

The drawings will become available any day now. I will let you all know as soon as they do. I'm excited about that....

Thursday, October 23, 2008

The day started with Cody getting up at 8:30 am. The first thing he said to me was that he wanted to go to school. Well that meant heading out there soon after. He really enjoys his time with the teacher. They have class in the waiting area that is adjacent to the elevator as you get off. If not one on one it's usually only two or three kids so they get special attention. Ann Marie is a very nice lady with a thick New York accent. She is very patient with the kids whom all have different needs. So I tell Cody I will give him 1 hour because he just finished his pre-meds and it takes that long before they can start the 3f8.

Around 10:00 I tell him it is time to go to his room. Without a fuss he runs out of the waiting area. I don't know why but he says that he likes going to his bed. I would expect quite the opposite. This leads me to believe that he doesn't remember everything that goes on in there. "I'm thankful for that." So we get started and he starts watching Scooby Doo. That works pretty well on keeping his mind occupied. Then the dance therapist comes in. Cody really loves when she spends time with him. They play with little toy animals, scarves, percussion instruments and listen to 'New Age ocean music.' :) She has the special ability to speak softly and let Cody take control of play time. He uses his imagination like kids do and she plays right along. It really helps him focus on something other than the pain. Well, he made it through the whole infusion of 3f8 like he usually does and even made it through the flush without any pain. As they were playing with the animals he asked her one of his 'drunk questions.' What I mean by 'drunk question' is it is one of those questions a drunk person would ask that no matter how you answer it you can't get it right. Well he kinda lost control for awhile after that and he said that he didn't want to play with the animals anymore. By now, the meds are really kicking in. Now he shifts his attention to Monopoly. This draws me into play time. I have found that when Cody is not going through 3f8 treatments he plays Monopoly like anybody else would. When he plays while getting his meds it is a completely different game. He tells you what properties you may or may not purchase. Cody is very good with money and numbers but while under the influence he does some very creating financing to say the least. Put it this way, if Cody grows up to work on Wall Street and dabbles in alcohol or drugs we will be in for a recession for sure... :) So we play the game and he actually eats for me while playing which really helped him I think. He was definitely feeling some pain because we had to stop 3 or 4 times so he could lie down. After a few hours the dance therapist says she has to leave and Cody gives her many kisses and hugs.

Now comes the waiting game. I get him to eat as much as I can. He needed two rescues so I was hoping that it would help him recover more quickly. His MIBG injection was scheduled for 2:30 so we started to prepare to go down stairs at 2:00. He asked if he could go to the play room for a minute while I gathered the stuff up in the room. I asked if he felt OK and would be nice. He said "yes," and ran out of the room. I hurried because I wasn't so sure he was ready for the world quite yet. Or if the world was ready for Cody.... As I rounded the corner hallway heading to the play room I hear Cody cursing somebody out in the playroom. When I get there he is shouting at the top of his lungs for someone to stop looking at him. I knew it was too good to be true. Anyway, I tell him that we had to go get the injection and the whole trip down he was telling me that I was the worse father ever. I hear that so often that I'm starting to believe it... LOL... When we get down to Nuclear Medicine he leaves a path or open mouths along the way. He drops a couple of 'F' bombs and 'Triple asses' as he passes people. I just apologize and tell them that he is on medication and he can't help himself. After sitting in the waiting area for a few minutes having him kick me and telling me to shut up a lady came in and asked me if I wanted to sit in one of the side hallways. She knew what was going on and just wanted to make things easier for me. I accepted and picked Cody up heading out the door. He started laughing like we were playing a game. He was right on the edge of coming out of the high he was on. As we sat down in the hall he spotted a water fountain with little cups. He said he was thirsty and headed in that direction. My old Cody seemed to be back. He was blowing kisses to all the ladies as they walked by. It is funny to watch people when your child acts so loving and polite. They almost don't know how to act. It definitely puts a smile on their face.

Well we get the injection and head back upstairs. The injection is for the MIBG scan which is scheduled for today. We had to go wait upstairs for his MRI scan which was scheduled for 5:30. So we played more board games while we waited.

If any of you are familiar with the MRI it is a very loud, noisy and scary procedure which Cody has always had while under sedation. Well someone decided that he could do it without this time. I had no problem trying because he is doing every other scan without sedation now. So we get started. I had to put a gown on also while going in with him. The MRI machine is a huge magnet that can do major damage to any metal you have on or in you body. It will also erase any of your credit or atm cards. So you must leave all your personal items outside in a locker. The MRI guy puts Cody up on the table and lays a heavy pad on his tummy. It looked and felt like a lead blanket but I don't know for sure. I didn't ask. Then he strapped him down to the table and got ready to start. Cody didn't say a word and laid there nicely waiting to get started. The table rolls him into the machine which is a tube that is just big enough for Cody's shoulders to fit. Now I must say, I would have to keep my eyes closed on this one because I think it would make me a little uncomfortable. Cody seemed to have no problem. Then the process begins. The machine starts with a series of different tone horn sounds. It had a little timer on the front that I could read. It read 3 minutes and it counted down. I thought to myself "3 minutes, this will be a piece of cake for Cody." Well, that was just a small part of it. When the time elapsed it started at 3 again and began another sequence of loud tones. Then again and again. I knew it was only a matter of time before Cody would want out. I think it would've been OK if it weren't for the loud sounds. Well he was about 15 minutes into the procedure and Cody wanted out. I asked the guy on the other side of the glass how much longer it would be. He said "15 or 20 minutes." There was no way.. Cody began to protest and started to thrash about so I asked the guy to stop. This was just too much. I told Cody I was very proud of him for being so brave and that he did his best. Cody then said to me "I told you I needed my 'Magic Milky' Dad." His 'Magic Milky' is the sedation drug they use on him that is white and looks like milk. I told him I was sorry but we had to try. He agreed and we headed out to get dressed. We will have to reschedule the MRI for another time. I hope it is when we return next month but we will see.

At 7pm we headed back to the RMH just in time for dinner. A church group was putting on a party for the kids and they had a DJ. Cody was doing his best 'MC Hammer' impersonation. Everyone loves to see him dance. He really is pretty good. He doesn't seem to have the dreaded 'White Man's Disease." LOL

I'm waiting for a load of laundry to dry right now. I'm going to let him sleep as long as he wants because he doesn't have to be at the hospital until 11:00 for his MIBG. I will have to get the room clean and everything packed tonight because we will be pressed for time tomorrow. We might not be able to get back here in time to check out so I have to get things packed and ready to go tonight. We are both ready to go home... :)

Tuesday, October 21, 2008

Well we found out today that Cody is not HAMA. And we found out in a big way. I have to think of a way to record this experience so that all of you can get a little understanding of what it is like. This is an absolute HELL!

This day started off at 6:45 a.m. I had to get Cody up so he could take his contrast for the CT scan he was to get at 8 a.m. This was a battle from the start. There is a fine line that must be walked when dealing with Cody. On one hand you have a little boy who wants the littlest bit of control of anything that is going on in his life. On the other hand we must get him to take meds, eat when we think he must, not eat or drink when it interferes with the meds and pre-meds. This by itself is very hard. He gets grumpy from not enough sleep. He gets grumpy from not being able to eat. Then we have the reaction to the drugs themselves. To say that this makes him act like Jekyll and Hyde is the understatement of the year. I can't even begin to quote the things in sequence that came out of his mouth today. On the Cody scale of '0 to 10', 0 being the best. I was the zero Dad in the whole world. Then 30 seconds later I am the 1,000,000,000th. The same goes for his nurse Kasey. She did the very best she could to walk the line of keeping him happy and doing her job. Sorry to say it just couldn't work. The absolute hardest part of this is telling yourself that he cannot control the things he is saying or doing. His body is hurting more than we can imagine so we give him pain meds that make him someone he is not. He says and does hateful things that he just can't control. Kasey says that all the kids have different reactions to these meds. Some fall asleep, some get very quiet and others get angry. Here are a few things that I can remember. When he didn't want Kasey or me to talk he would say, "turn the lights off, zip your lip, and don't make a sound." Meaning, shut your mouth. Believe me, he had no problem telling either of us to "shut up." If Kasey had to go to the room next door Cody would throw a fit. He told Kasey that he didn't love her anymore and he was taking all his kisses and hugs back. He told me that he wanted to go to a new family. This is not new but he said some other things that I just can't write here. I'm not talking about vulgarity but things that no 6 year old child should even think let alone say. I know he is exhausted. He has been crying, shouting or talking nonstop since 10 a.m. His eyes, lips and face are swollen. His voice is raspy and his nose is running. Myself, I have a splitting headache and I'm tired. I entered the day hoping and worrying that he was HAMA. By the end of the day I'm hoping that he didn't hurt much and that the meds will wear off soon. This whole process is insane. As I type he is finally telling me how much he loves me and that he is sorry for the day... It's not like he had any say in his day....

Monday, October 20, 2008

I just got off the phone with Diane and she gave me the 3rd degree for not calling sooner. My phone was dead when I got back to the RMH. So I hooked it up for a charge and we headed out for pumpkin painting and then to McDonalds for Cody's favorite dinner.

Cody didn't have much pain today but his heart rate went up to about 120. He was a little grumpy but we are not feeling good about this. They drew some blood this morning to do a HAMA test and we will find out tomorrow. We really don't want him to HAMA this quick. We hope that he will make it at least 4 sessions before he HAMAs.

Today he had his PET scan, tomorrow he has his CT scan, Wednesday he has his MRI, Thursday he has MIBG scan and then he has his Bone Marrow on Friday. On top of all that we must juggle not eating or drinking before those tests and not drinking around his 3f8 that he should be getting everyday also. "Can you say WOW?"

Saturday, October 18, 2008

Diane, Cody and I walked up to F. A. O. Schwarz the big toy store. I was able to get a few good pictures before the battery on my camera died. I'll post them when I get home next week.

While walking through Manhattan I spotted a famous person. Some you Law and Order fans will know him. Dennis Farina.

He and two other gentlemen were walking away from the Maserati dealership. He was about a foot away and walking in the opposite direction. I said to Diane, "that is a famous actor. I can't think of his name. He's on that show I like to watch all the time." I thump myself in the forehead because I can't remember crap anymore. My memory is getting so bad. Well anyway, it's good that I didn't ask him for his autograph because I would have been ashamed because I couldn't say his name. Actually I wouldn't have been as ashamed as Diane would... LOL

Well I made it here yesterday evening. When I got to the Ronald McDonald house about 7:30 Cody and Diane were waiting to head out. I knew Cody was in a good mood when I got here because he was messing with me. He wouldn't let me in the door of the room until he turned all the lights out. One of his treats this week were some Halloween spiderweb lights that go on the window. He wanted to show them off. They were planning on going to some really big, upscale toy store. She is still sleeping so I'll have to leave the name out for now. By the time we got there by cab it was 8:03 and believe it or not, it was closed. On a Friday in New York city a toy store closes at 8pm. That is just crazy. Luckily for us Cody took it in stride. We may try to hit it today.

Yesterday was a very good day for Cody, but that can be bad. I know what you are thinking, "Mickey is off his rocker." For those of you who follow Cody and this blog you have heard me refer to "HAMA". Well, when the child doesn't feel pain while getting the 3f8 that is usually the main sign. The nurses did tell Diane that it is not uncommon that by the end of the week the kids don't feel as much pain. Let's pray that is the case.... We don't want to HAMA for at least another couple of trips.... Anyway, he didn't have any pain and from what she could see his heart rate didn't go up that much.

After we were turned away at the toy store we walked back to the room but stopped at a local drug store and Cody bought some of those fake cotton candy looking spiderwebs that you hang on everything. That was one of the best investments I think I have ever made. He has that stuff hanging over half the room and has made himself a little "spider hideout." :) While laying on the bed and watching TV last night he literally beat the crap out of me. This is something he usually does to his brother at home but I'm playing that role until we get home. I know he is feeling good when he does that.. I'll post more this weekend.

Friday, October 17, 2008

So what do you think? I actually like them better. I've always been a graphite guy. It's just my favorite medium. But I do agree these will look better for Christmas... I'll let you all know when they go on sale....

Thursday, October 16, 2008

Diane said that Cody made it through the whole 3f8 infusion before the pain kicked in. Today was hive day. Many of the kids broke out with today's infusion. I mentioned before that certain batches have different side effects. Cody didn't want to talk to me today. He had many days like that last time. I'm glad for his sake that tomorrow is Friday and he will get the weekend off. He really deserves it.

Well you guys have made it clear that you want color and color is what you will get. I just finished adding a little color to the drawings and I will post them tomorrow. I must admit they turned out great. Even with the color they still have a rustic look which I love. I'll post them tomorrow before I head for the train station.

Wednesday, October 15, 2008

It was a little better than yesterday. Diane said he needed 6 rescues but he seem to handle the pain better. His heart rate didn't go up as high as yesterday. Yesterday it was up as high as 180 and today it only went up as high as 150 to 160. Two more days to go... Then he will get a well deserved weekend off before he starts week two.

I've finished the 3 card Xmas card set. Diane seems to think I should add color to them. Here they are. What do you think? You can vote to the right. Sorry for the typo in the poll question. I can't change it once people start voting. :(

Tuesday, October 14, 2008

I just spoke to Diane. She said that they started @ 1:30 and Cody needed 6 rescues. He was in excruciating pain. She said that he did fall asleep at one time but didn't sleep long. Some of the other kids fall asleep after getting so much pain meds but not Cody. I wish for his sake he could... After getting back to the RMH she said he was in a very foul mood. He was mean to her and everyone else. I feel so bad for her and Cody. It is such a terrible time that you just can't imagine it. I pray things get better tomorrow...

Monday, October 13, 2008

I just got off the phone with Diane at 9pm. As expected Cody had a very rough day. They didn't get him started until 4pm. After the long day that the nurses had, I guess they wanted to get Cody and Diane out as quick as they could. She kinda wanted to stay a little while longer so he could come down of the meds. He can be a real bear when he is on them.

The day started off kinda bad. I guess the Ronald McDonald House is full and they did not have any strollers left. Well I guess the hospital let her use a wheelchair. Pushing a wheelchair down the streets must be very different than pushing a stroller. Anyway, they started at 4 and I guess Cody had a pretty hard time. They had to give him 4 or 5 rescues of Dilaudid. Then they give him Vistoral which Cody is starting to have a very hard time with. They give it in place of Benadryl which Cody can not take. He goes totally crazy. So now she is trying to get him settled down for bed soon. I hope they have a better day tomorrow...

Sunday, October 12, 2008

So I dropped Diane and Cody off at Union Station this afternoon. Diane called me around 7:30 and told me they just got into a cab and were heading to the Ronald McDonald House. I could hear Cody singing in the background. She said he had his MP3 player on the whole time and was singing on the train.

Cody will get his blood work done in the morning and start his 3f8 around noon. I will post as soon as I hear how he is doing. Here are a few pictures from the train station. Oh, can you see the peach fuzz coming in? :)

Tuesday, October 7, 2008

Well today we are awaiting word from MSK. They will let us know if Cody can start his 3f8 pre-meds tomorrow. He had his blood drawn last week and it was sent up to NY. He and Diane will be heading up on Sunday if we get the go ahead.

I mentioned a few weeks back that my daughter Corie would be doing a bake sale to raise money for BOP. Well that has been put on hold. She received news the day she returned from maternity leave that she is getting transferred to Guam for the remainder of her enlistment. That is about a year and a half. She is scheduled to leave next month. She will be going by herself and her husband and children will remain stateside. I'm sure it will be a hard time for her to be away from the kids especially with both being so young. Hudson, her husband will get a crash coarse in parenting I'm sure. This is one of life's challenges that we learn and grow from.

Update:Cody didn't HAMA so he will begin pre-meds tomorrow and head to NY on Sunday!!!

Sunday, October 5, 2008

The BOP yard sale was a great success! The sale brought in over $750. Wow!!!! I must thank Trish who was the brain child of this event and her sister-in-law Julie. I'd also like to thank Nancy who is Justin's teacher who showed up before the sun to help also. All the wonderful people at Progeny Systems and Bennett Elementary who donated most of the stuff. The guys who shuttled stuff over to the sale did a fantastic job. A special thanks to Lynn and Gary Sikora who permitted us the use of their driveway for the sale....

I arrived around 7am and I can honestly say that we had customers there steady until I left after 1pm.

Trish has given me some other wonderful ideas for fundraisers in the future.

Here are a few pictures from yesterday..

This is a good friend from the Runners World Forum FeetDontFailMeNow. She dropped by and brought some stuff for the sale.

While downloading pictures from the camera I saw this one and had to post it. This is Blue and he has been a little lost since the passing of Bear. He seems to be finally settling in. He now thinks he is a lap dog. LOL

Wednesday, October 1, 2008

Diane will be taking Cody in tomorrow to get his blood drawn for the HAMA test. He will also get his breathing treatment. He has not seen Dr. Abu-Gosh for close to a month. I think she is having with drawls. LOL

Please don't forget about the yard sale on Saturday. It will be held at 7844 Elsinore Drive, Manassas, VA 20112 - it is right in the center of Prince William County off of the 234 bypass. The whole community is having a sale so it should be a good time. Please take some time and drop by.

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About Me

I grew up, ah, got older in Ford City Pa. A small town 45 minutes up the Allegheny River from Pittsburgh. Growing up a true 70's child I really thought that the Steelers were suppose to win the Super Bowl every year. :D Being the free spirit that I am I couldn't wait to get out on my own, so I joined the Navy. I flew out to the Philippines and met my boat the USS John Paul Jones DDG32. From there we sailed back to the states and spent most of the rest of my tour between San Diego and Long Beach. Since getting out I married twice, had 6 children and lived in Groton CT, Pensacola FL, Germantown MD and now in Northern VA. I've been married to my wife Diane for 10 years now and have three energetic and loving children. My life reads like a fiction novel in many ways. Many ups and downs but I feel blessed to have this life. To some it may seem boring but it's all mine.. :D